Steering Committee
OPTIMIZE DMD will be led by a Steering Committee comprised of 7 individuals including two Chairs (an endocrinologist-osteologist and a PPMD representative), two Co-Chairs (at least one of whom should be an endocrinologist-osteologist), and three members (at least two of whom should be DMD neuromuscular/rehabilitation medicine experts). The OPTIMIZE DMD Steering Committee will be responsible for guiding the Working Groups to meet deliverables and timelines that will be established at the Steering Committee level with input from the Working Groups, and with endorsement of the deliverables and their timelines by the Working Group Members.
Dr. Leanne M. Ward
Dr. Leanne Ward is a Professor of Pediatrics at the University of Ottawa where she has held a Research Chair in Pediatric Bone Health since 2010. She is the Scientific Director of the Ottawa Pediatric Bone Health Research Group, the Medical Director of the Pediatric Bone Health and Rare Bone Disease Clinic at the Children’s Hospital of Eastern Ontario (CHEO), a Senior Scientist at the CHEO Research Institute, and a Pediatric Endocrinologist in the Division of Endocrinology and Metabolism at CHEO.
Pat Furlong
Pat graduated from Mt. St. Joseph College in Cincinnati, Ohio with a BS in Nursing. She attended Graduate School at Ohio State University. While attending Ohio State, Pat spent most of her time in the Medical Intensive Care Unit. After marrying Dr. Tom Furlong, Pat ran the Renal Dialysis Unit and Patient Education Center at Akron General Hospital. With four children, Pat continued her career on a part-time basis, teaching patient education classes at Middletown Regional Hospital.
Pat Furlong is the Founding President and CEO of Parent Project Muscular Dystrophy (PPMD), the largest nonprofit organization in the United States solely focused on Duchenne muscular dystrophy (Duchenne). Its mission is to improve the treatment, quality of life, and long-term outlook for all individuals affected by Duchenne through research, advocacy, education, and compassion.
Along with leading PPMD, Pat speaks about Duchenne and related topics at conferences each year worldwide and is an active Board member with the National Health Council. She is also a committee member of CTTI (Clinical Trials Transformation Initiative) and serves on the data safety monitoring board for both the Rare Diseases Clinical Research Network and Cooperative International Neuromuscular Research Group.
Dr. David Weber
Dr. David Weber is an attending Physician in Pediatric Endocrinology and the Associate Professor of Pediatrics, The Children’s Hospital of Philadelphia (CHOP) and the Perelman School of Medicine at the University of Pennsylvania. Dr. Weber is the Medical Director of the Center for Bone Health and Research Director of the Nutrition and Growth Lab at CHOP. He is passionate about improving the endocrine and bone health care of people with DMD and has participated in multi-disciplinary neuromuscular clinics for over a decade, first at the University of Rochester and now at CHOP.
Dr. Weber’s research group is actively studying the impact of DMD and other chronic diseases on bone health. He also has an interest in rare disorders of bone mineral metabolism and is currently working on studies in conditions includingENPP1 and CYP24A1 deficiency.
Dr. Weber is currently co-chair of the Bone and Mineral Special Interest Group of the Pediatric Endocrine Society and a member of the Professional Practice Committee of the American Society of Bone and Mineral Research (ASBMR). Dr. Weber is a member of the Steering Committee, Co-Chair of the Adrenal Working Group, and a member of the Osteoporosis Working Group.
Dr. Jarod Wong
Dr Jarod Wong is Senior Clinical Lecturer/Consultant Paediatric Endocrinologist based at Human Nutrition, College of Medicine, Veterinary and Life Sciences at the University of Glasgow with clinical commitments at the Department of Paediatric Endocrinology, Royal Hospital for Children, Glasgow, United Kingdom. Dr. Wong leads the Bone, Endocrine, Nutrition Research Group in Glasgow (BEN-G).
Dr. Wong is the Lead of the Bone and Endocrine Working Group and Co-Lead of the Nutrition Working Group for DMD Care UK, a national collaboration between clinicians and patient group (Duchenne UK) aimed at developing and implementing standards of care across the UK. Dr. Wong is a Steering Committee Member of DMD Care UK (www.dmdcareuk.org). Dr. Wong is the Chair of the Clinical Committee for the British Society for Paediatric Endocrinology and Diabetes and sits on the Clinical Committee of the European Society of Paediatric Endocrinology.
For nearly 20 years, Dr. Wong’s research has primarily focused on the impact of chronic disorders, suboptimal nutrition, and glucocorticoid use on growth, puberty, and musculoskeletal outcomes.
Dr. Wong is a member of the OPTIMIZE-DMD steering committee; co-chair of the osteoporosis working group and member of the adrenal insufficiency and weight management working group
Dr. Susan Apkon
Dr. Susan Apkon, MD is the Fischahs Chair in Pediatric Rehabilitation at Children’s Hospital Colorado (CHCO) and Professor and Executive Vice-Chair in the Department of Physical Medicine and Rehabilitation at the University of Colorado School of Medicine. Dr. Apkon has focused her professional career on the care of children and young adults with neuromuscular conditions. She co-directs the Neuromuscular Program at CHCO and provides clinical care in the many multidisciplinary clinics in that program. As a Rehabilitation Medicine physician, Dr. Apkon focuses on the physical and cognitive impact of the specific neuromuscular condition with a goal of maximizing a child’s function abilities.
Dr. Apkon’s academic pursuits focus on the advancement of novel treatments for children with Duchenne muscular dystrophy and Spinal Muscular Atrophy. She has started two clinical trials programs. The programs have allowed children with these rare and progressive genetic conditions to participate in trials providing them with early access to potential life changing and life saving drugs prior to FDA approval.
Dr. Apkon has served the greater community in different capacities to support national organizations including Muscular Dystrophy Association, Parent Project Muscular Dystrophy, and Cure SMA. She is currently a Board Director of the American Board of Physical Medicine and Rehabilitation
Dr. Meilan Rutter
Dr. Meilan Rutter is Professor of Pediatrics in the Division of Endocrinology at Cincinnati Children’s Hospital and the University of Cincinnati. She completed her training in pediatrics and pediatric endocrinology in the United Kingdom, New Zealand, and the USA, before her appointment as a pediatric endocrinologist at Cincinnati Children’s in 2005.
She provides care for children, adolescents and young adults with a wide spectrum of endocrine conditions, with a clinical and research focus on improving the health of people with endocrine complications associated with Duchenne Muscular Dystrophy (DMD). She has served as the primary endocrinologist for the comprehensive interdisciplinary Neuromuscular Center at Cincinnati Children’s from 2006 and is also a member of the Center’s Leadership Committee. She has contributed to international awareness of the importance of proactively addressing endocrine and bone health issues in people with DMD and has conducted research and co-authored multiple publications in this field. She has been part of the OPTIMIZE-DMD Consortium since its inauguration in 2023.
Within OPTIMIZE-DMD, she serves on the Steering Committee, as co-chair of the Growth and Puberty working group, and as a member of the Weight Management and Bone Health working groups
Dr. Hugh McMillan
Dr. McMillan is a Pediatric Neurologist with specialization in Neurophysiology and Neuromuscular medicine at the Children’s Hospital of Eastern Ontario. He is a Professor in the Department of Pediatrics at the University of Ottawa and a Clinical Investigator at the CHEO Research Institute.
He is the Division Chief of Neurology at CHEO and the Program Director of the Pediatric Neuromuscular Fellowship Training Program at the University of Ottawa. He is a site primary investigator for clinical trials and has been the site lead of over 20 regulated clinical trials.
He is a member of NMD4C a Canadian Neuromuscular Disease Consortium, the Canadian Pediatric Neuromuscular Group (CPNG) and the Pediatric Lead for the Canadian Neuromuscular Disease Registry
He offers advice to the OPTIMIZE DMD Consortium as it pertains to Neuromuscular medicine and the care of children and young adults with neuromuscular disorders
Dr. Roozbeh Pourziaei Manesh
Dr. Roozbeh Pourziaei Manesh is a Clinical Research Associate at the Children’s Hospital of Eastern Ontario (CHEO) Research Institute. He holds a Doctor of Pharmacy from Shahid Beheshti University of Medical Sciences and an MBA from the University of Ottawa’s Telfer School of Management. Since 2023, he has been an active member of the OPTIMIZE-DMD Consortium, serving as the Secretariat for its Steering Committee.